Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[simeyss]

Neil McGregor's slides:

https://www.melbournebioanalytics.o...omics-for-mecfs-by-neil-mcgregor-august-2017/

 

[simeyss]

Chris Armstrong's slides:

https://www.melbournebioanalytics.org/me-metabolism-and-i-by-chris-armstrong-august-2017/

 

[Snow Leopard]

I'm feeling a little disappointed that the question about similarities with neuromuscular or connective tissue disorders did not mention the specific examples that I mentioned earlier that have very similar patient experiences to CFS and indeed these patients often get CFS diagnoses, namely Ehler Danlos Syndromes and the severe chronic fatigue following Guillian Barre Syndrome.

 

[Ben H]

@JaimeS on there too!

What a great panel discussion. I knew it would be great, but the transparency from scientists at this incredible level is just amazing. This is truly a landmark event.

I think an absolutely huge thanks needs to go to @AshleyHalcyoneH who organised this flawless stream, Raeka for doing a superb job with the panels and Janet @Janet Dafoe (Rose49) for being Janet and keeping us all in the mix with interaction. And of course Prof. Davis for being himself and concieving such an event, and the wonderful scientists for attending and working for us tirelessly. And of course OMF for sponsoring it!

Much gratitude.


B

 

[Rrrr]

@Janet Dafoe (Rose49) @rose49

Could you share this study with Ron regarding pregnancy helping ME patients? There is a researcher using that hormone with MS patients

http://www.npr.org/sections/health-...ormone-may-reduce-multiple-sclerosis-symptoms

 

[Rrrr]

@Janet Dafoe (Rose49), do you think Ron and your team could get in touch with this researcher mentioned in this NPR article?

http://www.npr.org/sections/health-...ormone-may-reduce-multiple-sclerosis-symptoms

Quote from the article: "The result is "quite remarkable," says Rhonda Voskuhl, an author of the study and a neurologist at the University of California, Los Angeles. It suggests that estriol could greatly enhance the effectiveness of current MS drugs, Voskuhl says."

 

[hixxy]

Listening to Ron Davis talk about plasma. A few years ago I had 61 vials of blood drawn and even my bones hurt, but the next day I felt great and it continued, though gradually declining, for the next 2 days. I guess now I know why! Maybe those medieval barber/surgeons were on to something.

That's a little strange. I've only ever heard of people with ME feeling much worse after large blood draws.

 

[hixxy]

I'm much too unwell to watch the video and even if I did I really don't absorb information from video/audio well at all. Does anyone have plans to do a blog?

 

[Rrrr]

Researcher using pregnancy hormone with MS patients and getting good results.
http://people.healthsciences.ucla.edu/institution/personnel?personnel_id=9327

Study:
http://newsroom.ucla.edu/releases/p...-promise-for-new-multiple-sclerosis-treatment

 

[Rrrr]

That's a little strange. I've only ever heard of people with ME feeling much worse after large blood draws.

i got sooooo sick when i gave blood (before i understood that i had ME).

 

[BurnA]

Well done Raeke and @AshleyHalcyoneH

 

[Gingergrrl]

I'm feeling a little disappointed that the question about similarities with neuromuscular or connective tissue disorders did not mention the specific examples that I mentioned earlier that have very similar patient experiences to CFS and indeed these patients often get CFS diagnoses, namely Ehler Danlos Syndromes and the severe chronic fatigue following Guillian Barre Syndrome.

I think it just wasn't the focus of this particular research but I would also love to compare ME/CFS with other neuromuscular diseases and with autoantibodies that do not "belong" to a specific disease at this point in time. Let me know if you ever want to chat further about this issue and compare notes!

 

[Isaiah 58:11]

That's a little strange. I've only ever heard of people with ME feeling much worse after large blood draws.

Then I am strange, I guess, but it definitely happened and I definitely have ME. Perhaps it matters that at the time I had a raging Staph infection? Anyway, I sure wish it would have lasted longer!

 

[Neunistiva]

This was an amazing symposium. It must have been so complicated to organize. Thank you so much to organizers and attendees. @Janet Dafoe (Rose49) @AshleyHalcyoneH @ChrisArmstrong

My mother had to watch most of it instead of me because watching even a bit that I did manage to watch was too taxing for me, but it was finally something worth crashing over

 

[Kati]

It was a very insightful conference which is shaping the way forward. I would have loved to hear the input from the norwegians and I am sure it would have added a few more pieces to the puzzle that is ME. I am looking forward to see if Cyclophosphamide and Rituximab prove to be effective as as the very least palliative treatments for a subset of us.
I also noticed Jarred Younger missing from the Community Symposium, i thought he was supposed to present. (Edit: he was there but did not present to the community) Hopefully he will publish soon as I am sure he has lots to contribute in the matter of brain inflammation.

Thank you so much to all who worked so hard to make this Symposium possible. i hope this is the first of many symposium which will attract scientists and physicians committed to make a real change in patients' lives.

 

[Sushi]

Brilliant, just brilliant! Hearing and seeing these dedicated researchers and their commitment just blows me away after so many decades of medical and research indifference. Thank you to all involved--the organizers, Dr. Ron Davis, the scientific advisors, the speakers and tagging some members here: @AshleyHalcyoneH , @Janet Dafoe (Rose49) @raeka @Ben Howell and anyone else my addled brain has forgotten.

 

[rosie26]

I couldn't follow along either but will savour it slowly when the video is available to watch. Thanks to all. I will donate to OMF soon.

 

[Hutan]

I certainly didn't intend to characterize an entire group of patients, and I hope no one thought I was saying every (or even most patients) are extraordinarily intelligent, nerdy, or non-athletic.

Thanks @Manders. As far as characterisations go there are a lot worse things to be than extraordinarily intelligent, nerdy and non-athletic. I don't have a problem with us tossing around theories here about things that might have contributed to our illness. It's when people in key positions to determine research directions present what seem to be unsubstantiated theories as facts that I get a bit ranty. Thanks for your followup post and welcome to the forum.

Sorry to distract from the symposium with that side issue. Thanks very much to all involved. I'd not heard of Raeka before and I missed her introduction. She did a very nice job of compering the sessions and seemed well across the developments.

The presentations are going to provide much to think about for the next few weeks.

I'm really interested in the nano chip that tests impedence. The finding that serum from ME patients contains something that makes a cell not work so well seems like a major breakthrough. Would it be possible for an independent research team to be given some chips in order to replicate the results with a different sample?

I'd also be very interested to hear a bit more about plans for identifying the mystery molecule in the serum as that must be a very important aim. (Apologies if that was covered in the final panel discussion, I had to miss some of that.)

 

[Old Bones]

Donation made immediately after the Community Symposium ended, with a note of thanks to the researchers and organizers.

I was particularly encouraged to hear Alain Moreau state that he is feeling very confident the CIHR's view of ME/CFS has changed (is changing?), and that we shouldn't have to wait too much longer for things to start happening in Canada. I don't recall his exact words, but they were positive.

 

[Gingergrrl]

I would have loved to hear the input from the norwegians

Me, too, and I would also love to hear from Dr. Schiebenbogen and Cell Trend in addition to Fluge & Mella and Kolibri.

As far as characterisations go there are a lot worse things to be than extraordinarily intelligent, nerdy and non-athletic.

Hey, that's me (sarcasm)... well actually the non-athletic part is not sarcasm